We are excited to announce that registration is now open for the 2024 Annual SMA Conference, which will be held at the JW Marriott Austin in Austin, Texas from Thursday, June 6 – Sunday, June 9, 2024. We hope you can join us for another wonderful weekend in the Lone Star State! As always, the Annual […]
Registration is Open for the 2024 Annual SMA Conference! Read More »
Cure SMA is thrilled to have recently been featured in the National Football League’s (NFL) My Cause My Cleats campaign. Through this fantastic initiative, players select a charitable organization and cause of choice, in order to increase awareness by wearing cleats decorated in honor of that cause. For Rachaad White, Tampa Bay Buccaneers running back,
Cure SMA Featured in the NFL’s My Cause My Cleats Read More »
Two high-ranking Administration officials and several Members of Congress from key congressional committees participated in Cure SMA’s November 29th Hope on the Hill dinner and reception, an annual Washington, D.C. event that raises awareness about spinal muscular atrophy (SMA) with key government officials. The 2023 event highlighted key SMA community advocacy priorities, including accessible air
“There is an endearing tenderness in the love of a mother to a son that transcends all other affections of the heart,” said Washington Irvine. When watching River Rolle wriggle in his mother Dee’s lap while he sweetly places his hand on her chin and looks into her eyes, there is nothing more apparent than
Community Spotlight: Dee and River Rolle Read More »
Breaking and Baking News! Get ready to dust off those aprons and preheat those ovens because Baking a Difference is back and better than ever for its second year! Created by kids, for kids, with hearts as sweet as the treats they bake, this heartwarming campaign is all set to spread joy and make
Sweet Success: Baking a Difference Returns for a Second Year Read More »
Biogen recently shared that they have completed enrollment in the global DEVOTE and RESPOND clinical studies. Check out the full SMA Community Statement here.
Biogen Shares DEVOTE and RESPOND Study Updates Read More »
Last week, Genentech, a member of the Roche Group, presented positive results from the primary analysis of the ongoing RAINBOWFISH study assessing the efficacy and safety of Evrysdi® (risdiplam) in babies with pre-symptomatic SMA, aged from birth to 6 weeks. These data were presented at the 28th World Muscle Society (WMS) Congress. Read more about
Genentech Shares 1-Year Primary Analysis from RAINBOWFISH Read More »
Dear SMA Community, It was a pleasure to be able to join so many of you at the Cure SMA Annual Conference in Orlando this year, and we look forward to seeing some of you again at the Cure SMA Chapter and Leadership Meeting. In this community update we are pleased to share a Plain
Novartis Gene Therapies SMA Community Update Read More »
Hey, it’s Allie here from Oklahoma! I am privileged to serve on the Cure SMA Adult Advisory Council and am part of a group of adults and family members with SMA who are in Washington, D.C. to help advocate for the SMA community. On Thursday, our group of SMA community leaders from across the country
Cure SMA on Capitol Hill – A Message from Allie Williams Read More »
Dear SMA Community, As we reflect on SMA Awareness Month, we take this opportunity to celebrate all those who are a part of the SMA community and the future we’re building together. We are grateful for those living with SMA and loved ones who share their experiences with others and help inspire our work, the
SMA Highlights and Updates from Biogen Read More »
